In June 2012, my 11-year-old son Andrew (a sufferer of severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and I traveled from our home in Northern Ireland to Hawaii, so that he could be treated by Dr. Jamie Deckoff-Jones, M.D. I had been informed that she had experience treating children with this disease and that she could help my son.

Money for the trip and the treatment costs was obtained through a fundraising campaign, done as a joint effort through members of our community and an organization called Little Acorns. A total of 22,806 pounds was raised, with 19,506 pounds of this from our local community. The plan was that we would remain in Hawaii for two months.

Andrew was treated by Dr. Deckoff-Jones for a total of two weeks. At that point, I disagreed with the doctor’s suggested treatment plan due to fears for Andrew’s safety. Dr. Deckoff-Jones’ response was to discontinue all treatment and to instruct us to return home to Northern Ireland, and so we did that.

Subsequent to the discontinuation of Andrew’s treatment, Dr. Deckoff-Jones and Little Acorns each issued multiple public statements concerning this matter. These statements have been inaccurate, hurtful to Andrew and the other members of our family, and derogatory toward me.

I thus am issuing this public statement to let the public know in detail what happened, both to tell my side of the story and to provide full information to those considering treatment by Dr. Deckoff-Jones in the future.

Please click on the link below to read my statement. If anyone has a problem downloading this and would like me to send you a copy via email or pm, please let me know.

Hi Jacqueline,
I’m and American woman with ME and have followed some of Andrew’s story since earlier this year.
In addition to being Vice President of a state Association, I am also working actively with a National Advocacy Alliance which is doing a poster campaign to spread awareness about ME. Since our goal is to show five patients of diverse age and illness level, I am wondering if Andrew might be interested in participating as our “pediatric” patient – the photo of him with the character would be ideal.
We would not use names unless the patient wants us to, but if you’re still raising money through Hope For Andrew, this could be helpful. If you’d like to know more, please email me directly and I can give you the details. If you’re not interested, no worries, and I wish the best for you and your family.
Thank you,
Donna

I’m sorry Andrew no longer wants to be In the public eye as it has caused great distress to our family we had raised the money for a years treatment and littlescorns kept it and we are left with a very sick child spending his 4th birthday in bed

Thank you, Jacqueline, for this website. I think there has been far too much secrecy with this situation with Little Acorns and Andrew\’s treatment, and I hope this website will allow for some answers to some questions.

I have not been a part of any of this situation, except for a monetary donation. I think, however, that explanations are in order. I have some questions which I hope Little Acorns will answer:

1) How much of the money which went to Little Acorns was, in fact, collected by Jacqueline and her local family and friends? Surely the charity kept records. Are they going to disclose them?

2) As a donor, I would like to see an accounting. How was the money spent?

In the USA, a patient or parent of a minor patient absolutely has the right to be informed in advance of proposed health care treatments and the associated risks, AND, the right to refuse those treatments in non life threatening situations. Disagreements are not all that uncommon and as a health care professional, I have witnessed fallouts between doctors and patient/families many times. But, I have never seen a doctor make public statements, especially derogatory in nature, on what should have been a private matter. I’ve never seen anything so unprofessional and so self-serving than what is written by Jamie Deckoff-Jones on her blog.

When I read that Andrew was going to travel so far to see JDJ, I had a very bad feeling it would not turn out well. On what basis was it determined that Jamie Deckoff-Jones was an “expert” on pediatric ME/CFS? Besides treating herself and her own daughter, she has the testimony of ONE woman in her 20’s who seem to improve after seeing JDJ. JDJ even admits on her blog that she sees a very small patient group in her practice because she is limited by her own illness. Are any of them children? Obviously, Little Acorns did not do their homework because a simple Google search would have revealed that JDJ is hardly considered an “expert” on ME/CFS in the USA .

I am so sorry that you and Andrew had such a bad experience in the USA and that Little Acorns has chosen to vilify you for doing what you felt was right for Andrew. Your story is important and should be heard loud and far! I’m very glad Andrew’s health is improving and there is no doubt in my mind that any money raised by Hope for Andrew belongs to furthering Andrew’s treatment and not to Little Acorns.

Jacqueline, have just read the interview you gave about your experience in Hawaii. Unbelievable is the only way I could describe what you have been through. Hope your link is still available for others to read.

Jamie writes still another blog post on this topic. She says that she has not bothered to read Jacqueline’s statement. Thus, those who have read Jacqueline’s statement can compare the two versions of the story, to see where the discrepancies lie and consider which one makes more sense, I guess.

Crying shame that everything went so badly. This was first bought to my attention by a post on FB. The post made me uncomfortable because I felt it publicly vilified Andrews mother, whom I’ve never met or at that point had even heard of..

The most uncomfortable thing of all though was to see DrJDJ (whom I have had much regard over the last few years) bring Child Protection into play.

I recognise that she did not act and call Child Protection. However bringing it into play publicly on her blog where comments can not be left, for fear of an Irish Bar fight does us and herself no favours.

best of luck and I hope no one has been so badly damaged they will not recover.

Jamie’s always been mad at somebody or other on that blog, since the very beginning. The way that she attacked Dan Peterson a while back was disgraceful, for instance. So my being one of those somebodies isn’t something that I take too personally.

What’s much more serious is that she says that she hasn’t even read Mrs. McMurdie’s statement and that she appears to be trying to discourage other people from reading it. It’s my feeling that if people do go read the statement and then return to look at Jamie’s recent blog entries, the latter will read a whole lot differently to them.

I did read most of the statement last night and am absolutely appalled at “Doctor” Deckoff Jones behaviour and treatment of both the little boy and his mother. Just absolutely bizarre.

I agree with Linda that she should have her license revoked. Giving a child her own prescription, whether or not it’s “just a medical food”, is not only illegal, but just so wrong, especially considering she hadn’t done any blood work on the boy. And insisting he drink high-caffeine energy drinks and coffee, is just pure insanity. It’s almost equal if not worse than what most idiot doctors would tell a patient w/CFS — “Oh, you just need to get out and drink more coffee — that’s why you’re so “tired””. She, of all people, should know better. But then again, if that’s her drug of choice, she obviously can’t see how it could harm anyone.

She also clearly sees herself as a victim. Always talking like she’s still a small girl in school, with her evil parents and evil step-brother. And when they aren’t “torturing” her, then the rest of the world is against her. Reminds me of “The King’s Speech”.

I APPLAUD ANDREW’S MOTHER AND ANDREW HIMSELF for their courage and strength, and am so glad to hear that Andrew is doing better. Thank you for “Going Public”.

There’s no doubt that mistakes were made by everyone involved in this unfortunate situation but once again Jamie Deckoff Jones takes no responsibility for her part. I find it interesting that JDJ threatens legal action for libel and cyber stalking in her latest blog post and then proceeds to completely slam Jacqueline’s character ..calling her a con woman, a pit viper and “a ventriloquist and Andrew is her mannequin.” Shameful…

If Jamie was as ill as she indicates then she had no business taking on the care of a sick child. Her continued need to vilify Jacqueline is deplorable and makes me think the doctor doth protest too much!

I am interested to see that Jamie has removed two of the posts related to Andrew’s case from her blog. The ones that are no longer accessible are “Adventures with Andrew” (where she took credit for his improvements and then published an Erratum suggesting that they were instead possibly due to “removal of a biotoxin”) and “Reply to Jacqueline McGorrian McMurdie and Lisa Petrison” (which she published yesterday).

The other two posts about this case, “Moving On” and “Elephant in the Room” are still up.

I think that it is important that those interested in this case have the opportunity to read all the materials that Jamie previously posted, so that they have a full understanding of what she has stated about Andrew’s treatment and the McMurdie family. I have screenshots of both of these blog posts, and so if anyone would like me to send them a copy, please let me know.

To Jacqueline and her family,
I am so sorry to hear of your experiences. I have read the testimonies and am convinced that they are the truth. I am so grateful to Linda and the others who came to your aid and helped Andrew to feel a bit better.

Whatever happens, you have already done a lot of good by putting these testimonies up for all to see. There is hardly punishment enough to make up for what you have already been through.

Your family is admirable in every way. You are a wonderful mother. May Andrew continue to improve and thank you for your brave efforts on his behalf.

I’ve taken Deplin myself and have gotten many prescriptions filled from Walgreens, and so the following is based just on my own experience.

Looking at the label of the bottle of Deplin from Walgreens that I have in my possession, my name is at the top LH corner (where the name “Jamie Deckoff-Jones” is in the photograph on P. 105 of Jacqueline’s statement).

My doctor’s name is at the bottom RH corner. You can’t see this in the still photo, but Jacqueline showed me the bottle on skype as well, and the bottom RH corner was where the name “M. Canfield” was listed.

In general, Deplin is a manufactured rather than compounded medication.

Lisa, I think invoking Abbie Smith as a ‘science blogger’ is unwise. That woman’s behaviour towards this community is purely to discredit them, rather than any genuine concern for Andrew. Over on Bad Science (Abbie Smith’s other spiritual home) this situation is being treated as stupid CFS parent goes to to quack doctor. Surely this is not what you want? by the way – I have been critiquing JDJ and Little Acorns for their treatment of Andrew and Jacqueline online for the past two days. You should really not be posting this here as if it is a neutral or benign treatment of this series of events.

I would like to make it clear that my mentioning this was not any sort of endorsement of the ERV blog in general, nor was it a statement that I agreed with the views expressed in this particular blog post. I just pasted the link here in case anyone wanted to look at it.

Thank you for your all your hard work on behalf of the sufferers of this disease — if more ME/CFS patients had family members like you and like Jacqueline, the world’s understanding of this disease would be totally different.

I believe a complaint should be filed with the appropriate authorities asking for an investigation of Little Acorn for misappropriation of funds. The authorities can be both civil and criminal. When the general public is asked to donate funds for a cause such as treating Andrew and they are used for other purposes, then an investigation is warranted by a third party. Little Acorn should be disbanded and Barbara Kell should be removed post haste over any administration of funds generated by Little Acorn.

Little Acorns is just a website. There is no acknowledgement of any structure and the registration details just give its owner as a private individual with the name Carole Carrick who appears to be a resident of Scotland. There’s no public statement about any relationship between Barbara Kell and Little Acorns or between Barbara Kell and Carole Carrick. One of the lessons from this gim affair is that anyone donating money, or seeking medical advice should make sure of the bona fides of the people involved and not be taken in by promises and sympathy.

These were two people in the little acorns barbara and carol,val chris, sarah jamie,martin my daughter caitriona have not been contacted with any details of accounting the others are 2 of barbaras daughters and a friend who works with one of them
We have been getting advice today and a further statement will be released in the next few days regarding the situation and more so the conduct of barbara kell where is the money from ireland is our question that was given to you in trust that andrew would have a chance of a better quality of life?????????????????????

Horrified to here another child has been approached by the little acorns. How can they do this with the money that was raised by our family and friends to help give our son a better quality of life. Disgusted to the fact that since the end of June Barbara Kell has been asked for a full accounting and still on the 8th June silence.

Glad to hear Andrew is doing well.
I know you’ve been through a lot lately, but some people have been saying that Andrew does not have ME after all. I’m really happy for Andrew if this is the case- and it certainly does not in any way minimize what happened to you and Andrew in Hawaii. Would you care to elaborate on your son’s state of health?
All the best,
Fatima

I thought it about time that I expressed my shock about the way in which you and Andrew have been treated, but also my relief at hearing that you did get to see some able physicians whilst abroad in the end.

I really hope that everything gets sorted out and wanted to wish you and your family the very best.

Who did you get to construct that e-mail? The blog said the patient was told to abrutly discontinue the meds, which is a very dangerous thing to do. Doctors instruct to wean off them. Nothing was said about them being told to wean. So your e-mail above doesn’t even have the facts straight. Anyone can make an e-mail appear how they want . But they may want to get the wording right next time.

As the posts and emails in my link make abundantly clear, I never have given any patients any sorts of instructions about going off benzos at any speed. As I state over and over again, I am not a medical professional and would not give people that kind of advice.

I thought this blog was to be a public voice for Jacqueline and Andrew. What does mold and benzos have to do with any of this?

Lisa, I understand you are taking a lot of heat for stepping up and interviewing Jacqueline and you have a right to defend yourself but it looks like JDJ is using you as a way to distract attention away from her despicable behavior with Andrew and Jacqueline. Let’s get back to Jacqueline’s story (JDJ is basically calling Jacqueline a liar about the coffee and energy drinks) and the lack of financial disclosure by the Little Acorns

Perhaps I need to make the reasons that I decided to interview Jacqueline McGorrian McMurdie about her experiences with Jamie Deckoff-Jones and Little Acorns perfectly clear.

These had NOTHING to do with my mold/biotoxin advocacy efforts, and it is unfair for anyone to attempt to punish other mold/biotoxin advocates or avoiders for my actions.

I first got involved in this when Jacqueline posted on my FB page, relevant to a discussion that some of us were having regarding Jamie’s “removal of a biotoxin” remark. Jacqueline wrote to me backchannel and said that she didn’t feel like anyone was hearing her story. I agreed to do a phone interview, just to see what she had to say.

I was really surprised at almost everything that came out of that interview. I had always thought that JDJ was really combative on her blog but that she was a wholly competent and caring physician to her private patients. After that interview (and the subsequent revelations), I stopped thinking that was the case.

However, the thing that has motivated me to pursue this is very specific: the threats to contact Protective Services in the UK and to state in the report that Jacqueline was “unstable” if Jacqueline did not do what Jamie said. Like everyone in our community, I am only too aware of what the UK government does to children who do not have their parents’ protection. Andrew himself went from moderately to severely disabled after a course of GET, and it was only because of his parents’ active intervention that he wasn’t subjected to another course of it.

Working on behalf of people who have been abused by the UK and US governments has been a guiding force of my interest in ME/CFS. I have spent more time looking at the role of biotoxins because I have personal experience with it, but in terms of where my heart lies, this one seems even more important. For instance, a document that I put together for the media on the role of exercise intolerance in CFS is attached, and I mention the topic of children being taken away from their parents in this essay I wrote in early 2011:

I imagine that many people reading this seen the movie “Voices in the Shadows.” But as a refresher with regard to thinking about this issue, I would like for folks to consider taking a refresher look at the 3-minute trailer for the film:

After watching that trailer again myself the other day, I feel like my decision to go forward with this is something that I was wholly right to feel compelled to do. Conceivably, if a UK parent was being severely sexually or physically or perhaps even emotionally abusive to their ME-afflicted child, and if no other options were available, Protective Services might be considered an option of last resort for people. But it seems to me that it should only be considered — especially for a child with severe ME — as an alternative that very well might lead to the child’s death.

Despite having spent a couple of years in the role of advocate for our community, JDJ does not seem to recognize the dangerousness of this action. I thought at first that she was just using that as an empty threat, in the heat of the moment, and so I was a little hesitant to bring it up to this community. I’ve used empty threats myself sometimes, and though I’m not proud of that, I’m not sure that I should be pilloried for it.

In this case though, it wasn’t an empty threat at all. For instance, in her blog on August 3 (now pulled), she states quite clearly that she was serious:

>I responded by saying that we could then wrap it up in a week and I could follow from a distance, doing the same things we would do if they stayed another month, other than neurofeedback which wasn’t going that well. I said that if they went home, the money saved would allow two other children to be treated in Arizona. That was when I got fired. She responded that I was trying to steal her money and she was going to call the police. Her behavior became increasingly bizarre, threatening, and at times seemed downright dangerous for Andrew. It all happened on a FaceBook planning page, which existed to serve Jacqueline, so a dozen witnesses were pressing me to call for child protection. It was a nightmare. I almost did call authorities after some particularly outrageous behavior, but after investigating the reality of what a report would do to Andrew, I decided that their returning home was the better part of valor. I decided to communicate with the referring doctor in NI and got a response that Andrew was doing well. I made that public, even though unusual, because I had dozens of enquiries from donors and readers of my blog. The public nature of the case was the mother’s choice, justified by the need to fund raise. It was always uncomfortable for me, but seemed important to the ME community at large at the time, and in particular, seemed that it would help other children needing treatment. Jacqueline had expressed a desire to help others in the abstract, but when confronted with it, she wanted all the money. For what? Andrew had been fully treated.

>As for the idea that this is all a misunderstanding, it is another deceit. Jacqueline understood everything perfectly well, until it served her purposes not to. When she realized that she would have to jettison me to hold onto the money, she turned into a pit viper. Nobody involved had ever seen anything like it; all witnessed by a dozen people, who had previously been committed to taking care of her. She got mad at them a little bit before she got mad at me, when she realized that they weren’t going to foot the bill for her husband and other son to come to Hawaii for a couple of weeks at the end. In my opinion, Jacqueline McGorrian McMurdie is nothing more than a con woman. She is a ventriloquist and Andrew is her mannequin. Unfortunately, she is initially convincing, but she leaves a very wide path of destruction behind her.

>The most important point is that none of it was about medicine or Andrew. It was all about the mother’s personality, a woman who is the most selfish person I have ever met in my entire long life. Let’s see… what were my huge infractions. I got sick one day, because Jacqueline was inconsiderate of my energy, as she was the whole time, because she wanted to go to town for ice cream, leaving me waiting for three hours. I crashed that afternoon and Lilly Meehan called her and asked her to bring me some coffee, since I was out and it helps me to function. In hindsight, the relationship was already breaking down at that point. She was already in conflict with Little Acorns over money. By the time I heard there was another doctor, I was relieved, because it meant I could stop thinking about calling the authorities.

She does not say here that Jacqueline was abusing Andrew in any way. She just says that she did not like Jacqueline’s personality and that she was acting in unspecified “bizarre” ways, and that she thus seriously considered calling the authorities. And everything that I have learned about Jacqueline — from the two witnesses who know her well, from the way that she talked about her son, from the kind of boy he appears according to everyone to be — suggests that she actually is a WONDERFUL mother.

Of everything that I have seen anyone in this community do, this is the most evil thing that I have ever witnessed. And I thus felt that it was my responsibility to stand up and say, you will not do that any more. Not while I have breath in my body and have any say.

So yes, this is none of my business. Yes, it’s bizarre for me to be involved in it. Yes, I understand why people have questions.

But if I did nothing, and then some other UK kid from Jamie’s planned children’s clinic got taken away from his or her parents because of Jamie’s intervention and then died, I wouldn’t be able to live with myself.

Hello Fatima those that doubt our sons condition are people who dont live with him care for him or deal with his medical needs. We have no doubt of our sons condition Jamie said he also had the onset of M.S, Spasticism and epilepsey just by looking at him so im surprised not many have heard about her when shes this good at dreaming up conditions and again the M.E community are cruel to fellow sufferers and this i will never understand.

Below is a letter that has been very hurtful to our family and our personal opinion is are these 2 people genuine sufferer?

I regret to inform you that Joan Mc Parland and myself will not be attending the Health Service Working group tomorrow. The reason is that unfortunately in recent days there has been irreconcilable friction between the Newry and mourne support group and the Little Acorns ME charity.
Little acorns was set up a few months ago by a committee in England,with the purpose of transporting little andrew to Hawaii, and funding his treatment there for ME. From the beginning there has been some disquiet about the Hawaii project among the ME patient community,both here and in GB. To date the charity has raised £13,000 most in the newry and mourne area.
mrs mc parland and i have a number of basic questions that have remained unaddressed. Andrew is already very ill. a) will a journey to the otherside of the world involving 4 flights and transfers one way actually make his condition worse b) has any doctor certified andrew fit to undertake this journey? c) in the likely event that andrew will need to be hospitalized while in the u s a has adequate insurance been obtained?
There is no doubt andrew is very ill and that having been badly let down by the local NHS Andrews parents are in a desparate situation and they might jump out of the pan into the fire.
However about ten days ago Mrs Mc Murdie began to force the issue (This was when i invited them to a coffee morning at the lord mayors palace on the 12th May awareness day) insisting Newry and mourne endorse the little acorn project. In fact little acorns had never at any stage consulted Newry and Mourne (absolute lies as mc parland was for a time on the planning group). All of the funds raised in northern ireland are banked in england.
When mc parland and i tactfully declined to give our endorsement mrs mc murdie resorted to a range of threats personal and otherwise. She has said several times that she intends to confront mc parland at the health committee meeting to expose her personally. this is the bulk of this very disturbing letter and the lies that mc parland and reid have told. As a result i have resigned from the committee as our son deserves more respect from the M.E community especially in Northern Ireland

Just an update to let you know my husband Trevor tried to contact Barbara Kell when he said who he was she set the phone down. The reasons for contacting her was to ask why she dated a cheque to him for the 31st June which there is no such day this was for the hotel in which she and her husband stayed at when they were in Ireland we had initially paid it and then when all this started she sent a cheque for the 130 but wrong date. Secondly to ask for the receipts for the statement of accounts as its along time from they made their accounts public but without reliable receipts. Clearly the position is getting more difficult for them to produce receipts as if their accounts were right they should of had all receipts present at that time.